June 2024
June 2024 Focus Group Discussion Summary
During the June Focus Group, it became clear that setting up a CER study in PFIC is not easy! Treatment choices can vary a lot across different diagnoses (“every patient is unique”). The first step is to find a consensus on which treatments to compare and the second step is to decide which patient-centered outcomes are relevant for the chosen treatments to include in the CER study. Moving forward, we aim to prioritize a list of PFIC CER research questions by July 2025 via the PFIC IMPACT Treatment Experience App and the upcoming focus group meetings.
Download the PDF below to read the full Summary Report!
April 2024
Conference Roundtable Discussion Summary
The 2024 PFIC Family & Scientific Conference served as a crucial platform to share updates & engage event attendees who may be encountering IMPACT for the first time. This conference also marked our first opportunity to have an IMPACT activity in-person! We held a dedicated 2-hour session on the first day of the conference that started with a presentation by the IMPACT project team members (Recording available in our Webinar Library!), followed by a facilitated roundtable discussion.
Download the PDF below to read the full Summary Report!
Module 3 Results
(April 2024)
Module 3 provided education about patient-centered comparative effectiveness research, and how to design research questions that lead to answers that matter to PFIC patients and families. The education section was followed by a survey to assess PFIC patients and providers’ priorities in treatment research. We asked participants to choose 2 out of 3 priority areas for research originally identified through prior IMPACT Focus Groups that they thought were most important.
Download the PDF below to read the full Summary Report!
The IMPACT Treatment Experience App (IMPACT: TEA) is now live!
The IMPACT Treatment Experience App (IMPACT:TEA) was designed by PFIC families and clinicians to provide information about PFIC treatments and patients’ experiences with them. It includes a survey to help us gather more info about patients’ experiences so that we can start to design research studies that are directly relevant to the PFIC community!
April 2024 Project Update Video
During this presentation, IMPACT Project Team members talk about the project progress-to-date. One of the most important milestones is the IMPACT web app which launched at the conference. The webapp is an interactive platform that lets patients enter their experiences with the different PFIC treatments and medications, and that provides summarized treatment information. This presentation was recorded at the 2024 PFIC Family & Scientific Conference hosted in partnership with Cincinnati Childrens Hospital.
February 2024 Focus Group Summary
The goals of this Focus Group were to: 1. Give a final review of the IMPACT web app and user recruitment strategy before it enters the development phase, and 2. Identify key themes and questions for the upcoming Roundtable Discussion IMPACT Activity at the 2024 PFIC Family & Scientific Conference . The feedback provided during the Focus Group discussion will be incorporated into the final web app design and conference roundtable activity taking place on April 26, 2024. We will present the beta version of the web app during the roundtable at the conference. The roundtable will also serve as our next IMPACT Focus Group, where we will have discussion about patient-centered outcomes research priorities in PFIC.
Download the PDF below to read the full Summary Report!
December 2023
Project IMPACT is designed to build a solid foundation for partnerships between patients, parents, clinicians, and researchers to jointly carry out future patient centered outcomes research in PFIC. The Module 2 survey and the December Focus Group had the same objective: understanding what the ingredients are essential for an ideal partnership between PFIC patients and researchers.
December Focus Group Summary
The goal of the December Focus Group was to discuss IMPACT Module 2 survey responses about partnership and how to apply them in future patient-centered outcomes research projects. The results from the Module 2 survey and the feedback provided during this Focus Group discussion will be used to create a “checklist” that shows all important issues to keep in mind when setting up a research project focused on PFIC.
Download the PDF below to read the full Summary Report!
Module 2 Results
Module 2 provided education about health research and how to be involved in patient centered outcomes research (PCOR) and comparative effectiveness research (CER). The module was followed by a survey to assess patients and providers’ previous experiences as partners in research. These responses will be used to design the second section of the IMPACT Research Roadmap, “Partnership Principles for PCOR/CER in PFIC”
Download the PDF below to read a full summary!
Fall 2023
Focus Group Summary (October)
The goal of the October Focus Group meeting was to organize and produce information about PFIC treatments to include in the IMPACT web app. We are hoping to design the web app as a mix of a PFIC treatment education tool and a data collection tool. During the meeting, we broke out into two groups (patients and clinicians) to work on different types of information for the app at the same time. The patient/parent breakout group focused on reviewing and expanding the list of treatments to be included in the IMPACT web app, then discussed their experienced benefits and burdens for each treatment. The clinician/researcher breakout group discussed how to approach providing clinical information about different treatments listed for the web app.
Download the PDF below to read the full Summary Report!
Module 1 Results (August)
Module 1 was designed to provide an introduction to what patient centered outcomes research (PCOR) is and how it works. They are designed for both families and a scientific audience, to ensure we have a shared base of PCOR knowledge going forward. Each learning module is followed by a survey that solicits more detailed feedback about the experiences and perspectives of participants. Module 1 looked at questions like “What are the most important questions that we need to answer, or issues we need to address, to improve the lives of PFIC patients?” and “What would research look like that is truly centered on patients and families?”
Download the PDF below to read the full Summary Report!
Kickoff Webinar
Want to find out more about our new project, IMPACT? This webinar provides an introduction to the project and a few of the project team members!